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New report calls for greater awareness of end of life decisions

A Loughborough University professor has highlighted the importance of forward planning about end of life issues in a report released today.

Professor Sue Wilkinson has called for greater public awareness of Advance Decisions (‘living wills’), as well as training of healthcare professionals, and the introduction of a central register.

In 2005, the Mental Capacity Act (MCA) made Advance Decisions to refuse treatment legally binding in statutory law. Since 2010, the national charity Compassion in Dying has been providing free information on end of life issues and Advance Decision forms.

Professor Wilkinson, founding member of the Helpline Research Unit in Loughborough’s Department of Social Sciences, reviewed more than 200 calls to Compassion in Dying. She found that major barriers to patients exercising choice were doctors’ failure to engage with patients about their Advance Decision, and the lack of systems in place to record them.

The study also found women (84% of callers) are more likely than men (16%) to make their wishes known at the end of life.

Professor Wilkinson said:

“This study has led to a number of recommendations for Compassion in Dying, and more broadly for the integration of Advance Decisions into advance care planning at the end of life.

“There is a need to better inform and support the general public in preparing for the end of life by extending outreach activities such as Compassion in Dying’s information line, and in addition engaging further with healthcare professionals. This is especially important given the central role GPs hold and that they are the professionals with whom most people want to hold end-of-life discussions.

“In the broader end of life arena I believe that a central register for Advance Decisions would help to better integrate them into advance care planning and thus make them more effective.”

Danielle Hamm, Director of Compassion in Dying said:

“We know that the majority of people (82% of those polled by YouGov in 2011) have strong feelings about their care at the end of life, yet very few people (3%) are recording them in an Advance Decision. This report is important to help to understand why this is the case.

The finding that poor professional practice and inadequate recording systems pose a barrier to people exercising their choices at the end of life is unacceptable. Compassion in Dying will work to raise awareness of these issues with healthcare professionals, in order to help ensure more people have what they consider to be a good death.”

Notes for editors

Article reference number: PR 13/149

The End-of-Life Rights Information Line

The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing info@compassionindying.org.uk or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT. The phone-line will be open between 11am and 3pm Monday to Friday.

Compassion in Dying

Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.

Compassion in Dying was set up in 2007 by the campaigning organisation Dignity in Dying to take on the charitable aspects of its activities. The two organisations now work in partnership.

While Compassion in Dying aims to increase people’s understanding of and empowerment around existing end-of-life rights through information, research and education, Dignity in Dying campaigns to extend and defend individuals' rights at the end of life.

The Loughborough University Helpline Research Unit works with UK and international helplines to help inform practices and policies. Members study the operation of calls to telephone helplines and have worked with organisations including NSPCC, Compassion in Dying, NHS Direct, AlcoLine, Child Health Line (Australia), and Health Direct.

Loughborough is one of the country’s leading universities, with an international reputation for research that matters, excellence in teaching, strong links with industry, and unrivalled achievement in sport and its underpinning academic disciplines.

It was awarded the coveted Sunday Times University of the Year 2008-09 title, and is consistently ranked in the top twenty of UK universities in national newspaper league tables. It has been voted England's Best Student Experience for six years running in the Times Higher Education league, and in recognition of its contribution to the sector, the University has been awarded six Queen's Anniversary Prizes.